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Meet Connor

Submitted by annamaryc on Tue, 12/02/2014 - 12:34

My son Connor Peter was born on April 8, 2009, he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) when I was five months pregnant. He had his first open heart surgery, Norman procedure, when he was two days old. He had some complications that included breathing problems and also had a staff infection while inpatient at the hospital and we were discharged when he was three months old. Around the same age, when he was three months, he had to have an emergency heart catherization done and they didn't know his platelets were not functioning properly, because of this he almost didn't survive. His heart was beating at two hundred and fifty beats a minute stabilized and he had six blood clots in his right lung. My husband saved his life, he recommended turning the ac on and it worked Connor's heartbeat came back to normal, it was amazing and I still get goosebumps thinking about it. We learned that Connor has Jacobsen Syndrome which caused the HLHS and why his platelets were not to clotting. Connor also has a slight learning disability, my understanding is that my chromosome 11 broke which is what caused the Jacobsen Syndrome. Around six months old Connor had his Glenn surgery he also had a feeding tube put in because he had aspiration and acid reflux. He got a mickey button six months later but we never used it so we got to take it out when he was two years old. At that time he also had his Fontan surgery, and set off a code blue alert because of the surgery tinkering with his heart, it was a very scary time. Connor is an amazing loving funny caring child and he is very intelligent he knows sign language, spelling and reading. He loves music, singing and whistling. He has a difficult time focusing due to a limited attention span as well as listening to others. But we are going to Children's Hospital Boston to run some tests and see what we can do to help him for his future and his schooling. I just want to let families know not to give up and to fight for everything your child needs and he or she will make it thru with flying colors . The first and second surgery was really hard but once you get thru that your pretty much at home base. My son is living proof if you have faith and never give up they'll be 200% healthier which is what our cardiologist told us in September of 2013. It is amazing a boy could come so far from being on a heart and lung machine to apple picking like a normal little boy . It brings tears of joy to me to see him this healthy and happy and to see him thrive everyday!!!!